Tuesday, September 19, 2017

Cole Graduates from OT! The struggle to feel normal...

Another HUGE milestone for the Bischoff Family was reached today! Cole has graduated from occupational therapy at INOVA Loudoun Hospital!

Cole started weekly therapy in the NICU at Fairfax Hospital.  It was mostly stretching and positioning, but it was therapy.

After discharge he started physical therapy with Jill (Reagan's therapist) on February 8th, 2011 and has been in therapy ever since.  That's 7 years of weekly therapy and for a while he was doing both physical and occupational therapy so he went twice weekly.  He didn't walk until he was almost 2 years old.  His journey has been very long and he has worked very hard. Anyone who has gone to physical or occupational therapy know that everything they ask you to do is hard...or it wouldn't be a goal.  He's had many therapists over the years and unfortunately we had to move from Children's Therapy Center to INOVA Loudoun Hospital when our insurance changed.  We definitely miss our therapists.  They truly have made such a big difference in both our children's lives and we owe them a debt of gratitude.

Although we are now free from private therapy, both kids are still receiving occupational therapy services through the school.  Their goals in school are very different because they must focus only on skills that impact their education.  For example, being able to open glue containers or effectively use scissors, or write legibly within the lines.  In private therapy we are able to work on those skills in addition to goals related to skills like dressing (e.g., buttons are hard for both kids) or other life skills.

You would think I should be ecstatic we have one less appointment and that Cole's therapist, Christine, thinks he is ready to take some time off. But it comes with mixed emotions.  Although I'm happy he has achieved his goals, there are still areas in which he needs extra work.  I am happy that she thinks he can achieve gains through his other activities, but it also increases the pressure of making sure we work on those things at home or through activities.  We have cut back on a lot of activities for a few months to try to settle down our hectic schedule and see if that helps the signs of sensory processing challenges.  Christine is going to build a home program for us to follow and we will focus on those to help him continue to see gains.  When you see how tiny he was when he started, and how happy he is today, I couldn't ask for more.  He couldn't even sit up on his first visit!

I've struggled for the last few weeks as life has started to feel "normal" again.  The doctor appointments continue to become fewer and further between.  Now with therapy being discontinued, it's closer to normal than we've felt in over 8 years.  But each time I've allowed myself to feel "normal" we've been kicked in the gut...either more seizures, or a concern about a shunt failure or finding out Cole needs to learn braille.  So my nature is to have my guard up.  But normal feels really good.  I still worry about what kind of job Reagan will have that doesn't require typing.  I worry when Cole grows up where he will live so he can catch a bus to get to work.  And as he is doing more reading now in first grade I am realizing that he will definitely need an alternative solution for learning - either braille or text to speech translation.  But we will carry on and find our way one day at a time.

So when I say "normal" I guess I mean nothing is emergent anymore...it has become a lifestyle and is therefor normalizing.  We have a child with partial paralysis of the left side.  We have a son who is legally blind.  We have a daughter in Heaven, and yet I find myself feeling guilty that they are doing so well.  I lost my 7 year old God son one month ago to an unexpected aneurism.  It has been devastating to lose him and heartbreaking to see how much pain it has caused his family and friends and how much our lives will forever be changed.  My father always says that God creates your spirit but a husband and wife create the body.  God does not create pain and doesn't cause or choose medical issues.

We had an interesting discussion this week about God's will.  When we face tragedy we pray and ask God for help. I remember praying, "God, please let Reagan live through brain surgery."  "God, please keep Kendall and Cole safe in my belly so they are healthy when they are born."  When our prayers are answered people always say, "Praise the Lord" as if he chose to cure the cancer or prevent death.  We search for answers for why God allows good people to feel such pain and face tragedy.  But truthfully we need to pray NOT for the outcome, but for the understanding.  So maybe instead of praying for good health, we should pray for the strength to face the illness if we get sick.

We pray and ask God not to take our child and then ask God why he let our child die.  We get confused and angry when our prayers aren't answered.  We get angry because we don't understand why He would allow this to happen to good people.  But maybe He is not in control of all the things we ask him to help us with in our prays...and therefore we are praying for the wrong thing.  God doesn't DO these things to us like give us a tumor, just like he doesn't create the hurricane that kills people and levels a town.  These things that happen are biological or nature at work.  We must pray not for an OUTCOME but rather for the ABILITY to handle the outcome.  It's interesting because if we accept this to be true, then the anger and frustration that something so horrible could have happened is not blamed on God, but rather He becomes a savior to help us move past the pain by
asking Him for strength.

As I continue to pray for strength and understanding, I want to share a photo I found this week.  It truly speaks to me.  I have often considered ending my blog now that life is no longer emergent, but I still want to believe that my journey as a purpose...and I don't know who I can help by sharing that journey. This photo is part of a project to help others understand the feeling of losing a child.  It is such a truly empty feeling.  A feeling I had almost 7 years ago and one that I feel again with the loss of my God son.  But today I have a new understanding.  I don't ask God why.  I ask God to give me the strength to move forward, feel happiness again, and support my friend and her family as they learn to live with a silence in their home that is truly life altering.  If you believe, please lift them in prayer as their journey to healing will be a long one. (You can click on the photo to view it larger.)

Empty Photo Project by Susana Butterworth

Monday, September 18, 2017

Camping amongst 3,400 ghosts!

After a very busy summer of work for both Johnny and I we were able to squeeze in a quick trip away with the kids.  We decided to try the Chesapeake Bay area since the weather was supposed to be amazing for mid-September.  We camped at a place called Point Lookout State Park in Maryland.  It is the point at which the Chesapeake Bay meets the Potomac River.  It was fun telling the kids this is the same water that passes by our house at Algonkian Park.  You could tell they were trying to figure that out.  We were so close to the peninsula that you could see the bay on one side and the river on the other.  It was nice to be able to see both as we explained the difference between the types of bodies of water.  They really liked that they didn't have to worry about the waves they are used to at the beach.

The peninsula was the location where over 52,000 confederate solders were imprisoned between 1863 and 1865 in the largest war camp in the Civil War.  Many of whom trekked there from Gettysburg!  There were between 3400 and 8000 soldiers who died right where our camp area was located.  It was amazing to think of how small the area was and how tight it must have felt with 52,000 soldiers.  This was very close to Dr. Mudd's house, which is where John Wilkes Booth fled after shooting President Lincoln.  So much history!  I can't say the kids completely appreciate the history yet, but they had fun regardless.

We climbed to the top of the Point Lookout Lighthouse which was standing when the prison camp was there.  The area at the top was SUPER small, hot and we found out later that was where the lighthouse keeper was found dead!  Eek!  Luckily she died of natural causes after taking over the responsibilities of the previous light keeper, her husband, after his death.  We were happy to be able to tour the lighthouse since it will be closed for the next year for renovations.

We also found time to ride bikes along the trails on the park, go swimming in the bay, go fishing and of course camp.  Unfortunately they didn't catch any fish, but they promise to try it again.The kids had a great time and we definitely look forward to going back when we have more time.  There were several other historic areas we wanted to be able to tour but didn't have time.

The only disadvantage of the trip was the crazy bugs!  Somewhat hard to tell in the pic of the kids, but they got eaten ALL over...including their faces!  Reagan is KNOWN to get eaten, so we keep spray in the camper and get it out as soon as we setup camp.  She was COVERED with spray everywhere except her face.  Watching her try to scratch her right arm is truly heartbreaking (lefty isn't strong enough to scratch).  Although I do have to give her credit - she gets very creative and rubs on the side of walls and tables.  We've also learned a lesson...it needs to get on the face or at a minimum in her hair.  We are also research alternative options for bug management :)  Like an industrial bug zapper!  The good news is that mom has gotten really creative with Calamine treatments.   I can apply many different designs including hearts, stars, polka dots and even Mickey Mouse ears.  It's all about making it fun right?!  And that we did just that...had a fun weekend just being with family. Feeling blessed...

Sunday, September 3, 2017

Here's to another school year!

I can't believe the summer is behind us and another school year has already started.  It was a fun summer but flew by with work being so busy this year.  We were so lucky to have my niece Allison staying with us to watch the kids.  They had SO much fun this summer going to the pool, swim team, playground and riding bikes.  We definitely wouldn't have had such a smooth summer without her!!  And I know the kids wouldn't have had so much fun!

The kids also wrapped up summer with a week of Grammy Camp!  I had to go to Seattle for work, my niece already left for college and Johnny had to go to Dallas to speak at a conference.  The kids hadn't stayed with my parents before but were very excited.  They literally talked about it daily for two weeks before they went.  The kids had a great time!  My parents bought them both little ceramic banks - a fire truck and a bunny.  Each day they got paid $.50 to do chores and clean up after themselves.  They were so excited to tell me all about their adventures.  They had a fun time reading every day, riding the tractor and golf cart, using their new bow and arrows, washing the car, weeding and working around the farm.  They thought it was so fun that they got paid every day!

After Grammy Camp we had Open House at school followed by Back to School Night and the first day of school.  Both kids have a new team of teachers this year.  Cole is going into first grade and has Mrs. Galvan.  We've heard really good things about her and Cole has come home every day very happy and sharing lots of stories.  After such a challenging end of the year last year this is such a huge relief.  His teacher had a lot of really good questions about Cole when we met at the Open House and I was glad she is so on top of his IEP and understanding the challenges ahead.  She sends regular email updates and is always at the school by 5:30am so her door is always open.  Hoping for a good year!  Cole also has a new TVI and a new occupational therapist.  His special education teacher is new, but Reagan had her last year and we are very thankful for that!  I think this will be a really big year in understanding what we are facing with his braille education and how much that will play into his curriculum.

Reagan is going into third grade and has Mrs. Sherry.  We've also heard amazing things about her and Reagan is already coming home with a big smile and very positive stories about school.  She was VERY nervous the night before school started and was worried about being ready for third grade.  One day in the class and all those worries are gone.  She's especially excited about the pom-pom jar. Once it has 50 pom-poms they get to plan a party!  I love created behavior plans !  Reagan also has a new occupational therapist but she has the same special education teacher from last year and the same one Cole has.  Reagan continues to express concerns about getting pulled out of class for reading.  We decided to work a little harder at home on reading and see if that helps.  We're hopeful that this year she will have a lot of her skills "click".

We recently got them both flash cards and they are helping each other practice.  Reagan quizzes the addition and subtraction for Cole and Cole shows the multiplication and division cards for Reagan.  We're trying to make it fun and luckily we found super big print cards so they are easy for Cole to see.  We also purchased a new series of books for Reagan called Critter Club.  We're hoping if we keep trying different books it will help peak her interest.

So we're off to another year of school and I'm off on another trip to Seattle.  One more after this and I'm done traveling for the year.  We're looking forward to a few camping trips this Fall in addition to several doctor appointments so updates will surely be coming!

Summer full of braille - ESY and NFB BELL Camp

Well the summer flew by with a lot of West Coast business trips for mom which meant NO time to keep up with my blog.  So I'm playing a little catchup now...but better late than never is my motto.

Cole was able to qualify this year for the ESY program through Loudoun County.  This is an Extended School Year program for children who will see set backs if they are not able to continue their eduction over the summer.  This is different than "summer school" which is provided for children who are falling behind in school and need a full school day.  His ESY was for vision support only.  He qualified for 2 hours per week for four weeks.  He went to Horizon Elementary School for those weeks and saw the TVI (Teacher of the Visually Impaired) who had seen him toward the end of the school year, Jessica.  ESY and summer school rotate each year with where it is hosted and this year it was at Horizon for the Cascades area students.

We also decided to have Cole participate in a two week braille camp that was offered through the National Federation for the Blind.  It was hosted at St. George's Episcopal church in Arlington who was gracious enough to provide the activity room and kitchen.  This year there were four students in the camp, two twelve year old girls, Cole and a three year old boy (almost four).  Camp was from 9am to 3pm every day for two weeks starting July 31st.

The focus for camp included practicing O&M (Orientation and Mobility), braille lessons, and self advocacy and self care.  A huge focus of the program is to prepare children to become independent.

The kids had several outings and activities that helped them with these skills.  One of the first things they did was decorate new canes.  Cole of course chose batman tape to decorate his.  Unfortunately it didn't even last a week !  If you're wondering, no, they don't work like light sabers.  The first week they went to a playground not far from the church and learned to navigate crossing busy roads, curbs, grates and uneven terrain.

They also took a field trip to the White House Museum in Washington DC.  I was able to go on the field trip and it was very educational!  We had an appointment with a curator who was able to provide several tactile displays for the kids to learn about what it's like to live in the White House and the surrounding monuments.

There was a miniature white house they could touch in addition to local monuments and plastic food that were favorites in the White House.  It was a very challenging experience for another mom and I to escort a group of blind children and teachers through the busy streets of DC.  I had never before realized how many flower planters, lamp posts and broken bricks that were in the middle of our walking path. As an example, although Cole does have sight, he has no ability to see the cross walk signals across the street.  During our walk through DC they talked a lot about what you could hear to help you determine where it was safe to go, when it was safe to cross and how to help make those decisions.

I asked about the audible crossing signals and if they felt those should be Federally mandated.  Interestingly enough, the one teacher felt these actually give a false sense of security.  If you don't get used to listening for cars, you may not catch a taxi taking a right on red or a bus running a red light.  Hearing these dangers is critical for survival.  I truly can't image closing my eyes and trying to cross a street in DC.  It's actually quite frightening and dangerous with sight.

They had a lot of fun themes throughout the two weeks including a Dr. Seuss themed cooking day when they worked in the church kitchen to make green eggs and ham.  They were taught to navigate the kitchen safely and to use knives to cut their food and prepare food without getting burned.  You will notice that children with some sight were given "sleep shades" to take away any ability to use sight.  They firmly believe this helps increase the ability for the other senses to kick in and help them navigate their world.

Rock climbing was the field trip the second week and they all had a lot of fun!  Again, the experience is everything from getting there, doing the activity and getting home.  They taught them to use touch to help navigate the wall.  A very important skill for people without sight!  They also went to a local deli and needed to order for themselves and carry their food/tray to the table.

Another fun activity was a visit from the local fire department.  I shared that our company does education events to help children get more comfortable with the equipment firefighters wear and to hear what the SCBA (self-contained breathing apparatus) sounds like when a firefighter is breathing through it.  It really does sound like Darth Vader! They were able to coordinate a visit from the local Arlington station and the kids all really enjoyed touching the equipment and talking about fire safety.  I love that Cole was sitting right up front!!

The firefighters came on Super Hero day when the kids decorated special capes - because each is truly a super hero!  They also made special super hero masks.

They also made fun snacks.  One day was a movie day and they brought blankets and wore pajamas.  They also made "braille mix" which was a lot like trail mix but the M&M's represented braille dots, the pretzel sticks represented their canes, and the Cheezits represented a "full cell" which is the full combination of Braille dots.  So very clever and these little touches really made camp fun for the kids.  They also had a camping day where they made s'mores!

They also had a final graduation ceremony where the each child presented information on a different person and participated in a play.  One presented on Louis Braille, another on Helen Keller and another on Dr. Seuss.  I had no idea Dr. Seuss was not a doctor and that he hated kids!  They shared the story about his friend challenging him to write a book with exactly 40 words...and that's Green Eggs and Ham!  Cole played the part of Louis Braille in the camp play and did a great job!

Overall Cole learned a lot and we are very thankful for the amazing staff who supported the camp. They were so patient with all the kids, very kind and very creative in thinking about themes and activities to keep the kids engaged and have fun.

He will continue his braille education this year in school with another new TVI.  We are not sure when he will start using braille for instruction versus learning it.  I expect some of that depends how quickly he picks it up and how much of his school work begins to be a challenge due to small print.  He has a very demanding schedule this year and I'm worried about eye fatigue and headaches.  His day in first grade starts with 30 minutes of independent reading followed by 15 minutes of reading out loud, followed by one hour of guided reading, followed by 45 minutes of word study/writers workshop.  I pray he is able to handle the intensity of that schedule and plan to maintain close communication with his teacher, TVI and special education teacher to monitor how it's going.  I try to just keep reminding myself - One. Day. At. A. Time.